Research reveals widespread issues faced by marginalised families with autistic children

A new report from the University of Birmingham reveals the widespread discrimination, biases, and lack of resources available for marginalised families with autistic children in the British health, care, and education systems.

Challenges included getting a diagnosis, accessing educational support, challenging illegal exclusions, and getting carers support, for example when taking time off work to care for a child who has been excluded.

The report, from Dr Prithvi Perepa, Professor Karen Guldberg and Dr Simon Wallace, at the Autism Centre for Education and Research (ACER), University of Birmingham, looked at families belonging to a minority ethic community, whose first language is not English, those who come from economically disadvantaged backgrounds who have an autistic child, as well as autistic children in care.

The latest government SEND and AP Improvement Plan sets out changes and investment into the system to help children and families better access the support they need. However, the government announcement made no mention of specific support for marginalised families.

One of the first issues faced by parents and families with autistic children is getting a diagnosis for their child. Long NHS waiting lists are a problem for all families, but this can be made even worse for those from marginalised backgrounds or communities.

Dr Prithvi Perepa explained: “Getting an initial diagnosis for an autistic child is a universal struggle, as outlined in the government’s recent SEND and AP Improvement Plan. But this becomes even harder when faced with institutional bias and racism, as well as language barriers.

“Data from the Department for Education shows that 2.2% of pupils in England have been identified with autism as their primary need, but within that there is a huge over representation of White British and Black British children. Those from Pakistani, Indian and ‘White other’ communities are under-represented in these figures. This is due to a host of issues, but a complex and seemingly hostile system and insufficient understanding of the impact of marginalisation amongst professionals are certainly the biggest, especially if communicating in English is difficult.”

The researchers also found that schools do not offer appropriate educational support. This could be in part due to a lack of diversity amongst school staff. According to DfE data, 64% of school pupils are White British, but a huge 90% of teaching staff and 96% of headteachers are White British. For families, this can create a barrier when asking or accessing help from schools, and further ingrain racial biases.

One parent interviewed for the study commented: “I am aware that there is a risk that certain conscious or unconscious biases may seep down from teaching staff. There are differences in teachers picking up dyslexia for example between different races. When it came to his dyslexia application, they tended to ignore it.”

There is also an over-representation of children on free school meals who have an autism diagnosis. 17% of the general school population are on free school meals compared to 28% of autistic children, and rates of exclusion from schools are much higher in pupils with autism, especially for those from minority ethnic communities or on free school meals. This can create further complex challenges for families struggling financially. Taking time off from already low paid jobs to care for their child who has been excluded can mean that they miss out on pay, or don’t have the flexibility to do so in the first place. Parents and carers who recently arrived in the UK also find it difficult to fight these illegal exclusions due to lack of resources to help navigate the education, health, and care systems.

Following a discussion in the House of Lords around autism and school exclusions, Lord Touhig directly referenced ACER’s ‘fantastic research’ in this area and is pressing the government to ensure the needs of autistic people are met in the education system. Lord Touhig commented: “Research from the University of Birmingham on autism education is essential to making a difference to the lives of autistic children and young people, this latest research highlights that the right resources and support needs be put in place urgently, so that we can improve the quality of life of those autistic individuals.”

Professor Karen Guldberg concluded: “Our study reveals a detailed picture of how the health and education systems are letting down these vulnerable families. Parents and carers struggle to access support and resources every step of the way, from getting their autistic child diagnosed, to dealing with local authorities and schools.

“It is imperative that these families receive the attention they deserve, and that local and national government make steps to improve the situation. From seeking to diversify the teaching workforce and making the systems for getting help less bureaucratic and intimidating, changes need to be made urgently for the benefit of all.”